Just diagnosed with overactive thyroid

Hi I have just been diagnosed and feeling a bit like a fish out of water. The only information I have been given by my doctor is a print out of hyperthyroidism and that my TSH is -0.01 and my T4 is 40? I have been given carbimazole 20mg to take each day and was advised I will receive a hospital appointment in a few weeks, I also have to go back for blood tests again in 3 weeks. I really haven't a clue what is happening besides having really bad hot flushes where I am wet , feeling shaky and really bad anxiety. Any advice would be really great please thanks

31 Replies

  • Hi there, I was diagnosed with Grave's Disease officially about 2 years ago. But I was clinically diagnosed about 9 years ago. It was a roller coaster of a ride. I'm now 16 months post Radioactive Iodine. My thyroid is currently stable. I'm not on any medications at the moment. However, I frequently get bloodwork to check my thyroid levels. I do deal with Thyroid Eye Disease. I've been seen my an Ophthalmologist and I'm currently waiting for an upcoming appointment which is a consult for Orbital Decompression Surgery. I have a blog about everything I was going through and like you I was alone in my struggle hence why I started my blog. Feel free to read it here:http://mybeautifullifestruggle.blogspot.ca/

    Hang in there and never give up.

  • Hi Mysticmusicgurl thank you so much for your reply will have a look at your blog thanks again

  • hi Lesley, I don't know much about you or what may have triggered your overactive thyroid. The carbimizole will hopefully bring the levels down to where you will stop shaking at least. In the meantime watch your diet and try to avoid sugar as much as you can. Other people here have a lot of knowledge about this and if you give details about your age sex weight general health etc then they might be able to help you more. Anyway you are not alone there are lots' of us right here that have experienced what you are experiencing now. One thing though from my experience never be afraid to seek a second or third opinion.


  • Hi Batak thanks for your reply. I never thought about the other details.

    I'm female 45 a little over weight but isn't all women lol I had a hystorectomy last October and I'm on HRT as well as citalopam it did seem to be OK until the hot sweats, fog brain and shakes anyway until I had my blood tests I thought maybe it was hormones due to the hystorectomy.

    I hope some can tell me what the information the doctor gave me about my bloods.

    Oops I hope everyone can see this reply lol never thought of that.

    Thanks again guys for your reply

  • Lesley45. Hi, I was diagnosed in 1994 with overactive thyroid (gestational) they said. I had Anxiety, weight loss, massive sweating, paranoia, depression etc.i was on Carbimazole for years until it affected my anti=bodies and i had to have Radio Active Iodine treatment in 2004. Now i am under active due to the treatment and on thyroxine for life. Its not fun either way. just make sure if you have a sore throat while on Carbimazole you must go see your doctor, and your bloods should be checked every few weeks. Good luck and keep your chin up.

  • Thank you Mary. You have all been so nice I'm in tears thank you so much I really appreciate it xx

  • The doctors do not give much. i was given thr dame diagonosis 6 months ago and apart from blood tests and hospital appointments nothing has changed. I have been put on a weekly infusion of steroids as my sight has been affected too. It is so bad and there is not much support. Try herbal supplements too

  • Hi cbraffe, which supplements do you recommend. As for my eye sight I'm already blind as a bat having -11.50 in both eyes hope it doesn't affect them. Thanks for the reply

  • 200mcg selenium daily

  • If they haven't already been tested, your antibodies need checking to see if the hyperthyroidism is Graves disease.

    Make sure you get all your test results so you can keep an eye on them and also post on the forum if you are not sure what is going on (you need the ranges too, the numbers in brackets, as different labs have different ranges) The tests that 'should' be done are TSH, FT3 & FT4. Being on Carbimazole, there's a risk of going hypo, if they dose you too high or leave you on too high a dose too long. The dose is personal, no two people react the same to antithyroid medication so its up to you to keep an eye on your symptoms and test results.

    Keep a look out for any changes in your eyes - dryness, puffiness, bulging, blurryness, as it may point to Thyroid Eye Disease and you will need to be referred to an Ophthalmologist.

    Try to eat a clean diet and rest, keep away from stressful situations if possible.

    Your hyperthyroidism may well have been triggered (but not caused by) the hysterectomy as all the hormones play a part.

  • Thank you so much silver-fairy I don't see the doctor till 3 weeks and not sure when I will get an appointment at the hospital? Can you please tell me what a hypo is and what are the signs to look out for? Thanks again

  • Hypothyroid - Carbimazole reduces production of thyroid hormones when excessive amounts are being produced by an overactive thyroid. So if left on Carbimazole too long or too high a dose you will swing from being hyper to hypo.

    Hypo symptoms - Tiredness/fatigue (but not the wired/tired of hyper) constipation, dry skin/hair. It's difficult because some symptoms go for both eg joint/muscle pain etc. To start it may be best going by your test results. Keeping a diary may help.

  • I am taking Buckle weed and selenium and Goji berry juice . on my last appointment i was told i have to hace 12 sessions of Radiotherapy. Which I do not look forward to .

  • Thanks so much. I hope it all goes well for you I will be thinking of you always xxxx

  • It is life changing but life must go on. I find drinking alot of water helps too.

  • I think I'm only just realising that now. Thanks so much for the advice I will try to drink more water but it doesn't taste nice lol 😘

  • Add some squash . it is not very pleasant but keeps tge sweating and pounding heart in check

  • Will do thanks

  • Hi Lesley45,

    Did the doctor say what might have caused hyperthyroidism? Do you have pain in your neck (front)?

    I was overactive 1 year ago. There was inflammation to my thyroid gland. Apart from a Standard tsh test you need all tsh, T3,T4, 2 types of thyroid antibodies test and CRP and ESR to see if there is any inflammation in the body.

    I had inflammation in my thyroid gland and was very painful but I had no antibodies. It took months for inflammation to go away. Usually, it pushes you in under active mode as thyroid gland struggles to produce enough hormone. I think I am currently under active slightly (still in lab reference range) and therefore still struggling. It is expected that 'one day' it will return to normal. I hsve noticed a trend through regular testing and can say it is coming down (tsh) albeit very very slowly.

    Regular testing is important.

    I also had to have an ultrasound of my neck which showed I had thyroiditis.

    Hope it helps you. Thyroid road is rather long.

    Good luck

  • Too long rather

  • Thanks activelazy, no mention what might have caused it. I was having really bad hot flushes, really bad anxiety and had shaky hands. Also I didn't realise but a few months ago I started to not be able to pull myself up by my legs like there was no strength in them but not sure if that's a factor. Anyway dr sent me for a blood test and the next thing they gave me a print out and wrote on it the TSH and the T4 results. It's not until I found this site that I have really had any idea what's happening to me. Thank so much for your reply

  • Muscle weakness is common.

  • Lesley45

    Oh. I had the same problem with my legs. Trying to pull myself up, I still have to take help from my hands/ arms. It hurts around knees. It started some time before the hyperthyroidism. hope you feel better soon.

  • I have Graves disease and my T4 was 86 on diagnosis . I felt anxious , agitated , hot , moody and totally not me .I felt like I couldn't cope with anything . I took carbimazole for 15 months and gradually started to feel better . I hope you start feeling better soon .

  • Thanks ianswife I really hope so too, I'm off work till Monday and I'm dreading going back, getting really panicky thinking about it. I have to go back as I have already had three weeks and with being off with the hystorectomy last October work are not happy with me having more time off.

  • That's understandable and I actually had three months off work and eventually handed my notice in. I was very fortunate that I was able to do that . I hope it goes ok .

  • You'll need to find out if you've got Graves' (antibodies) or not really. There are people who know more about Graves more than me..and I won't pretend to know anything about that... I do have experience of thyroiditis though.. overactive thyroid --> underactive. If it's Graves, the carbimazole is probably going to be the treatment for a while; if it's thyroiditis you'll need to make sure you come off the carbimazole as soon as your bloods are approaching 'normal', so you don't crash into a very deep hypo state (they'll probably put you on Levo then). A thyroid scan will also be beneficial to make the diagnosis more obvious. In the meantime, go to Thyroid uk and follow advice on supplements for overactive thyroid which are, interestingly, similar to those for an underactive thyroid with some notable exceptions.. iodine being one... go easy on anything containing iodine for a bit, for example, salty sea fish, dairy, some meats. You'll need fatty acid vitamins and omega 3, lots of b vitamins and magnesium and potassium to tackle the tachycardia that goes along with an overactive thyroid. Hoping that you soon know what you're dealing with and that you are fully supported when you do! :-)

  • Hi, did the doctor not give you propranolol for the anxiety, shaking, sweating etc? It really helps the symptoms you're describing. In fact I would make another appointment sharpish and ask for a referral to the endocrinologist. I have found, as have many others on this site, that GPs tend to have very basic knowledge of thyroid issues. You may have Graves disease so your antibodies really need tested.

    You might find you get side effects from the carbimazole too. You might find you get tummy issues, insane itching (hands and feet usually) and hair loss. I take an antihistamine for the itching. You can get it prescribed in 4mg doses so you don't get the fatigue.

    Main advice - sleep, eat healthy foods, don't drink alcohol, or eat sugary snacks. Yoga.

    Good luck x

  • Hi I have been in remission for the past year and I feel for you that internal shaking is horrible a bit like a car left in idal it took nearly two years for me to feel any where near back to myself but I'm 90 percent now I still have good weeks and bad but I still have very high graves and hashi antibodys they haven't really dropped at all but my bloods are now all in range

    So GP is on longer interested it will get better hang in there if you look at my previous posts you will see how desperate I was the inside trembling was one of the first symptoms to go the weakness a lot longer

  • I was diagnosed with Graves' a year ago. Have been on Carbimazole since then and have thankfully been fine on it. Most of my hyperthyroid symptoms (tremors, palpitations, muscle weakness, hip pain) went away within 3 months. I still have the odd occasion when I don't feel 100% fine, but I'm mostly back to normal. I have cut down on gluten/lactose and focused on improving my diet. Lots of vegetables/fruit with good proteins. I supplement with selenium, omega 3, vit D (was deficient), and vit K. As others have said, it is also important to reduce stress in your life. Good luck with your treatment and recovery!

  • Thank you all so much for you great advice 😍 I'm just taking day by day and hopefully once I get to see them in the hospital I will know more. Thanks again

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